Sunday, June 26, 2016

This week I read an upbeat article in a popular magazine
about a family raising a daughter with autism that offered good insights into
life with autism. I found myself agreeing with most of what the parents were
quoted as saying until the last paragraph. The author states that the parents
“grow weary of what they believe are common misconceptions surrounding autism,
including the role of vaccines, which they don’t believe are the culprit.” If,
indeed, the parents truly feel this way, they seem to be accepting a popular
stance the media presents on a controversial issue. However, as parents we must
not grow weary and must continue to seek all potential causes of autism if we
have any hope of helping our kids get better.

Similarly, I have read essays written by adults who say they
have autism and by parents of children with autism asserting that trying to
cure children of autism is wrong and that parents should accept their children
as they are. Some will support this belief by stating, “This is how God made
them,” suggesting that trying to help the children with autism is going against
God’s will. Isn’t the point of life trying to become the best people we can be?
I believe that our role as parents is to help our children develop their
potential so that they can live a fulfilled life, instead of tolerating a life
that is more difficult than it needs to be.

Perhaps some parents have not endured the struggles we have
gone through with autism and simply don’t know why acceptance is not
acceptable. Having dealt with a child whose extreme anxiety––which often
accompanies autism––led him to become a danger to himself and others with his
aggressive panic attacks, we know that parents must constantly seek answers to
the cause of autism and search for the best treatment methods. In our situation
we needed to make major changes because of Alex’s fluctuating hormone levels in
his teens, bouts of candida yeast overgrowth in his digestive system that
agitated him, and a need to switch SSRI medications to address his OCD when
Prozac stopped working for him. Instead of just believing that God made Alex
this way and tolerating a terrible situation, we believed that God would help
us weather the storms and show us what we needed to do to help Alex overcome
these obstacles. We chose assurance­––God’s promise of faithfulness––over
acceptance, and God fulfilled his promise by leading us to the professionals
who knew how to help us make Alex better.

This week we took Alex to two community events in our local
downtown park: a movie and a concert, both of which he thoroughly enjoyed. A
few years ago, we would have never dreamed that he could have sat happily and
calmly in the midst of crowds and activity for two hours. Even though we
believed he would get better through therapy and treatment, his progress has
surpassed our expectations and allowed God to show his goodness to us. In
addition, we have begun to wean him off one of his medications for anxiety
under the direction of his psychiatric nurse practitioner because he is doing
so well. While we had some concerns about how he would react to this change,
thankfully, he has adapted amazingly well, showing no negative side effects to
the lower doses of this medication.

As we listened to the music at the concert in the park, an
image from the lyrics to one of the songs resonated with me. Although I can’t
remember the exact words, the gist was that we are all waiting to be diamonds. Curious
about how diamonds are actually made, I found an article online at Live Science
that summarized the process: “bury carbon dioxide 100 miles into Earth, heat to
2200 degrees Fahrenheit, squeeze under pressure of 725,000 pounds per square
inch, and quickly rush toward Earth’s surface to cool.” Essentially, what’s
needed to create something beautiful and strong is to take something common and
ordinary and subject it to extreme heat and pressure. Certainly, autism has
created figurative heat and pressure that have tested us and shaped Alex, who
is well on his way to becoming a diamond. As we watch him try to convey an idea
through words despite his difficulties in generating speech or to complete a
simple task with hands that have not yet mastered fine motor skills, we are
amazed at the patience and tenacity he has developed over the years. He never
gives up, knowing he will eventually complete what he has started, reminding and encouraging us to never give up, knowing with complete assurance that God
will complete what He has started through His good works in Alex.

“Faith is the confidence that what we hope for will actually
happen; it gives us assurance about things we cannot see.” Hebrews 11:1

Sunday, June 19, 2016

Raising a child is no easy task, and being a parent of a
child with special needs adds a whole new set of unimagined responsibilities.
After more than two dozen years of watching Ed rise to the challenges of
raising our son with autism, I am amazed by the patience he has developed, the
strength and calm he exhibits that make me stronger and calmer, and the
unabashed pride he takes in even the seemingly smallest of Alex’s achievements.
Through the good and the bad and even the horrible times, Ed’s devotion to Alex
and me has remained constant and has even become stronger with time, and for
that, I am truly grateful.

I’ve heard it said that the best thing a father can do for
his children is to love their mother. Alex witnesses every day how much his dad
loves me through his thoughtfulness, respect, and affection. Moreover, Ed also
expects Alex to treat me the same way, often reminding him, “Did you tell Mommy
thank you? Well, tell her!”

In addition to mentoring Alex in how to treat others, Ed has
also held Alex to high expectations. While my natural tendency would be to
mollycoddle Alex because autism makes simple tasks difficult for him, Ed knows
that he needs to learn how to do things on his own. For example, if Alex needs
to wipe his face after eating, I grab a napkin and do it for him. Ed, on the
other hand, patiently gives Alex directions, telling him to pick up the napkin
and instructing where he needs to wipe his face and praising him for doing a
good job. Similarly, he expects Alex to pick up after himself, whereas I would
just come along behind him and put his things away for him. However, I won’t
always be around to wipe Alex’s face or to pick up his belongings for him, so
it’s a good thing Ed teaches him to be more independent.

Some of the most precious moments of my life are when I
watch the two of them together without their being aware of my presence.
Looking out the kitchen window, I have seen Ed patiently teaching Alex in the
backyard how to throw or kick or catch a ball, encouraging him, no matter how
many times Alex had to try before he could do it himself. When he finally
mastered the skill, his face lit up, and he looked for Ed’s approval; his dad’s
face matched his own, beaming with happiness and pride, as did mine watching
from the window.

Sometimes I eavesdrop on their conversations and find the
give and take amusing. Since speaking is so difficult for Alex, we hang on his
every word, even when we have to ask him to repeat or clarify what he has said.
I know that Ed savors his conversations with Alex because for many years we
weren’t sure if he would ever be able to say more than a few words at a time.
As they chat about baseball and jazz and the stock market and other interests
they share, they thoroughly enjoy each other’s company and appreciate what the
other has to say.

Because children never fully appreciate all their parents do
for them until they have children of their own, Alex may never realize all of
the things his dad does for him. From being Alex’s personal chauffeur to cutting
up his food into bite-sized pieces to helping him get dressed and all the other
tasks most twenty-four-year-old young men can do without their father’s help,
Ed unfailing takes care of Alex and never complains.

By lovingly caring for Alex, Ed not only takes care of
Alex’s daily needs, but he has also developed Alex’s faith in God. Knowing that
he can always depend upon his earthly father, Alex has no doubt that he can
completely trust his heavenly Father. In fact, Alex’s perception of God as
being smart and funny probably comes from his attributing these qualities to
his dad. However, he rates Ed as being in the high ninety percentages in these
two areas, but he gives God 100% rankings in the intelligence and humor
categories, noting that only God is perfect. Indeed, Alex is right about God’s
wisdom because God knew exactly what kind of father Alex would need to guide
him on the less traveled road of autism and gave him Ed. How blessed I am to be
the wife and mother to two such extraordinary men!

“The father of godly children has cause for joy. What a
pleasure to have children who are wise.” Proverbs 23:24

Sunday, June 12, 2016

“Keep on rollin’; keep on rollin’. Oh, you got to learn to
roll with the changes.”––"Roll with the Changes" by Kevin Cronin of REO Speedwagon

Commonly, people with autism have strong preferences for
sameness and routines, which makes them resistant to change. For example, Alex
insists on having a bath every night at exactly 6:00, and rarely can we
persuade him to move this daily event to another time unless a much better
alternative event convinces him to alter his sacred schedule. However, we have
noted that over time, he has become increasingly flexible and less anxious
about changes in his routine. Indeed, he is learning "to roll with the changes."

This week was my first week of summer vacation from
teaching, which could have thrown Alex for a loop since he’s used to just being
with his dad in the mornings while I’m at work. As it turned out, I was gone
for parts of four mornings with two meetings and two breakfast outings with
friends. This probably helped Alex ease into the transition of our summer
schedule. Also, I try to help him deal with any anxiety by always leaving him a
note telling him where I’ve gone and when I will return, which seems to comfort
any worries he may have about why I’m gone and when I will be home. We’ll see
how he responds next week when I’ll be home because my morning schedule isn’t
as busy.

On Monday, Alex had his routine six-month appointment with
the psychiatric nurse practitioner who prescribes his medications for anxiety.
We were pleased to discover that she deemed the results of all of his blood
tests “perfect” because they indicate that he is in excellent health and that
the medications are not having any negative side effects. In addition, we were
delighted that his behavior was fantastic during the appointment, calm and
pleasant while he answered all of her questions. Of course, Alex was pleased
that her schedule was running right on time so that he didn’t have to sit in
the waiting room.

After we discussed his progress with her, she raised the
issue I knew was coming––reducing his medications. As she pointed out, we can say
that because things are going well, we shouldn’t rock the boat and should keep
the medications the same. On the other hand, she noted, because things are
going well, this may be a good time to reduce his medications. In a twist of
roles, Ed, who is usually more receptive to change than I am, commented that we
probably shouldn’t make any changes because Alex is doing well. Although I
completely understand his logic, my mother’s instinct believes that we need to see if Alex
can cope with less medication, and so with some trepidation we will try weaning
him off one of his medications this summer and pray that we are doing the right
thing.

On Tuesday, Alex met with his behavioral therapist for his
regular weekly session, which went very well. Although she often doesn’t arrive
at the scheduled time because of her busy schedule that requires travel through
heavy traffic between two counties, she was ten minutes early on Tuesday. While
that could have thrown Alex for a loop, he adjusted nicely to her early arrival
and had a great session with her. Similarly, he showed flexibility on Wednesday
when his peer companion who spends every Wednesday afternoon with him had to
cancel at the last minute because she wasn’t feeling well. With two changes to
his beloved routine in two days––one minor and one major––he still managed to
be upbeat and calm.

On Thursday, Alex had his weekly session with his music
therapist who is always punctual, faithfully arriving at his scheduled time
every week. This week, he arrived early, and Alex again dealt with this change very
well. In fact, his music therapist described the session as “fantastic” and
noted that this was the second week in a row where Alex had done especially
well with him. Of course, we were pleased by this positive report. In addition,
he handled nicely a change in our dinner routine because Ed and my dad were
attending a dinner reception for VU basketball season ticket holders, so Alex, my
mom, and I went out to a restaurant for dinner. Alex seemed to enjoy himself
thoroughly, and we remarked how much we enjoy taking him out to dinner because
he behaves so well.

Friday threw Alex another curve ball, however, when his
behavioral therapist had to cancel our planned recreational therapy session due
to a family emergency. Even though Alex had been looking forward to going out
to lunch at Subway with her and me, he didn’t seem terribly upset that our
lunch plans had been altered. Later that evening, we discovered that our
central air conditioning had broken, yet Alex continued his calm demeanor. As
the temperatures rose into the 90’s yesterday, he never complained about the
heat and only seemed amused to watch the thermometer rise in his upstairs
bedroom, commenting that the it had never been that hot before in his entire
life.

Because we have to wait until next week for the air
conditioner to be repaired and because our bedrooms upstairs were too warm,
even with windows opened and fans turned on, we decided to sleep in the
basement, where it was much cooler. As we set up the pull-out bed in the couch
for Ed and me and put Alex in basement bedroom twin bed, he seemed to view the
experience as a grand adventure. Although I was concerned about how he would
sleep in a different bed, he once again showed his flexibility, sleeping
soundly in a new spot.

While Alex, like many people––including me––prefers the
comfort of familiar routines, he is learning to accept and perhaps even embrace
changes that occur, even when he doesn’t have time to prepare for them. This
increased flexibility makes our lives easier because we don’t have to worry
about his anxiety escalating. Moreover, he is realizing that life doesn’t
always go as planned, and learning to roll with the changes will make his life
more content. This week with all its unexpected alterations taught Alex
valuable lessons and reminded us just how far he has come, and we continue to
be thankful for the progress he has made.

“Behold, I am doing a new thing; now it springs forth, do
you not perceive it?” Isaiah 43:19

Sunday, June 5, 2016

Although summer doesn’t officially begin until later this
month (June 20th at 7:34 P.M. Central Daylight Time exactly, as Alex
would add), for many of us summer starts as soon as the school year ends. After
finishing up teaching my seventh grade English classes on Friday, essentially
my summer has begun, other than having to spend tomorrow morning finishing up
paperwork, submitting grades, and completing end-of-the-year tasks. Since Ed
completed his spring semester last month, Alex has been eagerly awaiting my
school year to end because summer officially arrives when both of us are home
to spend time with Alex as a family.

In anticipation of this first week of our summer, Alex has
been planning what he’d like to do with this special family time that we are
blessed to have because we are teachers. Usually, he makes a specific list of
places to go and things to do. This year, however, he seems more spontaneous
and open to suggestions about summer activities. In fact, when asked what he’d
like to do this summer, he responded, “Put more miles on Daddy’s car.” He
doesn’t care where we go or what we do, just so long as we go lots of places
and make that odometer move forward. That flexibility shows us progress on his
part.

While summer brings good weather, vacations, family
gatherings, and a less structured schedule––all of which most people
treasure––summer also brings greater incidences of wandering in people with
autism for all of those reasons. According to statistics provided by the
National Autism Association, 49% of children and adults with autism wander away
from places of safety and put themselves in dangerous situations, often fleeing
toward bodies of water or swimming pools, busy roads, or train tracks. Every
year many of these people with autism die from drowning or being hit by cars or
trains.

While we are fortunate that Alex does not seem to be one of
the wanderers, we still watch him like a hawk and have put safety precautions
in place, such as having locks he cannot open and having him wear a medical
identification bracelet in case he would be separated from us in a crowded
place. Even though he can say his name, our names, his address and phone
number, as well as my parents’ names, address, and phone number, his poor articulation
skills and likelihood to panic if he were lost would make understanding him
difficult. Hence, we have him wear the bracelet with key identifying
information that he may not be able to tell in a crisis.

Why do people with autism wander and put themselves in
danger? The National Autism Association offers potential reasons.

In addition, the National Autism Association offers many
helpful tips to keep children with autism safe. [To view their webpage with
safety guidelines, please click here.] Specifically, they focus upon
prevention, education, and response. To prevent wandering they recommend the
following:

––home safeguards, such as locks and fences to keep children
from wandering from home;

––identification bracelets or tags;

––community awareness to alert those who might encounter the
child and to teach how to interact with them;

––and hyper vigilance to make sure the child is closely
supervised, especially in unfamiliar situations.

For education, the NAA recommends identifying triggers that may
cause a child to elope, such as loud noises, and teaching them ways to cope
with stresses other than running away. In addition they recommend providing
swimming lessons to keep them safe around water and using social stories to
teach them about safety.

If a person with autism wanders, the NAA recommends
immediate response, including calling 911 right away and searching dangerous
areas first, including water, railroad tracks, and traffic. Since people with
autism are drawn to these places that pose imminent danger to them, family and
first responders should always search these areas immediately. In addition, the NAA
offers the following essential and helpful guidelines for law enforcement
officers when dealing with a case of a person with autism who has wandered.

Although summertime usually brings relaxation for most
families, for families with autism, summertime means increased vigilance to
keep our children safe. Thanks to the efforts of the National Autism
Association, helpful tips for keeping our kids from wandering and for dealing
with the crisis of wandering remind us never to let down our guard when it
comes to protecting them from harm. Hopefully, awareness of this crucial issue
can prevent more tragedies from happening when people with autism wander. Of
course, as parents, we also pray that God will always keep our children safe.

“The Lord is my rock, my fortress, and my savior; my God is
my rock, in whom I find protection. He is my shield, the power that saves me,
and my place of safety.” Psalm 18:2

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.